A way to dump all the stuff I wouldn't want to lumber my family and friends with. So if you're a friend or part of my family and you've heard it all before, I'm duller than I thought. Sorry.

Tuesday, September 14, 2010

I have £4.5k worth of drugs on me

That's the price of three months of Imatinib the drug that has kept me alive for 3 1/2 years by completely suppressing the disease I still carry, Chronic Myeloid Leukaemia. In all likelihood as long as I keep taking the drug it will stay suppressed forever.

For the 15% of users that are not lucky enough to tolerate this drug, there are second line treatments. Both Dasatinib and Nilotinib can be used as alternatives and have similar life-giving properties. Not life enhancing, not life lengthening necessarily, but life saving. They, like Imatinib allow the patient to lead an almost completely normal life and for many years.

At present the two drugs are under review by the National Institute for Health and Clinical Excellence (NICE), for use by local PCTs and at last time of asking 5th July 2010 has stated:

''Until final guidance is issued for dasatinib and nilotinib in the imatinib-intolerant chronic myeloid leukaemia population, decisions on treatment should be in line with local health policy.''

In reality this equates to an actionable statement for PCTs to not prescribe the drug, a life-saving cancer drug.

Chronic Myeloid Leukaemia only effects around 800 new patients per year. 15% of that no. is 120 people. 120 people does not constitute an empirically valid dataset upon which NICE to base a decision. However on that basis there will never be enough empirical data in the UK for it to ever make a decision. A much larger empirically valid US dataset has already been submitted to NICE, but it is deemed unacceptable as it comes from outside the UK. This is a convenient reason given that the drug appears to act in the same way across the world and across different ethnicities.

It is my belief this procrastination (that could easily be maintained in perpetuity) is based on cost. The two therapies cost around £30k per year. That's damn expensive I understand that, but in reality that's a total drug cost of £3.6million.

We live in austere times but there's potential to keep scores of people alive at the cost of £3.6million. I don't think that's an awful lot of money. The Conservatives during the run up to the election made a pledge that any patient with the disease should be allowed any drug licensed in the last five years, if their doctor seeks it, even if NICE has ruled against its use. This is relevant in the case of Dasatinib and Nilotinib.

At this present moment there has been no action on that pledge. I made a promise at the time that I would give it three months and at that point I would take action. That time has come and my quest to ensure this manifesto pledge is carried through starts here. If you agree that this is worthwhile please add yes (plus any comment you wish to below).